Bengaluru: While the world is observing primary immunodeficiency (PI) awareness week (from April 22 to 29), immunologists in city lament there is little awareness about this disease, which affects children, and no proper study has been done to assess its prevalence.
They said the city may have up to 5,000 children suffering from PI and in many cases parents may not be aware of it."In Bengaluru, anywhere between 1,000 and 5,000 children are suffering from PI. However, the total number is grossly underdiagnosed as we do not have a proper study on the same," said Dr Sagar Bhattad, a pediatric immunologist at Aster CMI Hospital. He said in the last two months he came across four new cases of PI.
Regarding the disease Dr Sagar said those affected are predisposed to increased risk of infections due to a defect in the immune system are called Primary Immune Deficiency Diseases. "These children have repeated infections: pneumonia, diarrhea and skin rash. Some of them are very serious and children die within the first year of life. Others are less severe and children keep suffering for years, unless diagnosed. Sadly, the country also lacks trained immunologists," he said.
According to Dr Sunil Bhat, Senior Consultant and Head Pediatric Hematology, Mazumdar Shaw Cancer Centre, Narayana Health City, "Most of these children die of one of these infections very early in childhood. It is very important to be aware of these conditions and diagnose early so that curative options can be offered."
As for treatments he said the patient has to undergo bone marrow transplants or replacement with immunoglobulins. "In India, we are now diagnosing more and more of these conditions in the last few years, thanks to the better diagnostic facilities. But it is estimated that still only less than 5 per cent of these children are picked up. Even those who get diagnosed a very small percentage get treatment."
"If a child is repeatedly falling sick, he should be scanned for PI. Thus far, we have seen numerous cases wherein a child is repeatedly hospitalized during first few years of his life. These are clear indications of a PI," he added.
